To Schools and Nursery’s or any body looking after the Children born unable to swallow

2015-16

In doing this website what I find hard to understand, is the lack of understanding from people who claim to be qualified to look after children. When a Parent comes to you and says I have a child who struggles to swallow and will need help eating, why do I then hear that its a fight to get the help needed for that child? Take it from me now 53 when food sticks panic sets in when I was a child all I needed was to know someone who understood was close by me, not too much to ask, is it?

In time the child will learn how to overcome this like I did and others like me, but until that time arrives, YOU as qualified adults need your wits about you. Because what you have on your hands is SERIOUS, not to be a cost-cutting move, because, at the end of the day, it’s your duty as the qualified person to make sure that child is taken care off. If you read my story your read it’s like swallowing though a time glass type tube. Now being Adults I guess you been drunk, and in being drunk you understand throwing up, or choking on food, you as adults still don’t like this, so put yourself in a child’s body, trying to deal with having food stuck every meal, the chance food could pass into their lungs, try putting yourself in the shoe’s of the Parents asking you for your help in looking after their child.

I can be harsh like this because I have lived this, and this is one reason this site was started, to bring about change for the Children born with these conditions. Or think of the paperwork needed to explain why a child in your care ended up in a hospital or worse died in your care.

The youtube video here talks about Children not like me choking on food.

https://www.youtube.com/watch?v=BCGBZfdZlyo

If a Parent comes to you asking for your help please take notice, this child, their child needs your help, DONT brush this request under the carpet. Because at the end of the day, your being paid to look after the welfare of this child. If anything was to happen to that child you as the qualified adult would have to live with the outcome.

 

time glass 2

This is a time Glass. This is what a child you have in your care has, food will stick on the top of the narrowing area, this is a quick way of allowing others to understand what you are dealing with, this is how my Doctors explained this to me when I was growing up, if a child struggles to swallow, inside may look like this, my advice to you is have, patience and show understanding.

1750-1172-2-24-3-l

The above drawing show the op to join the two half’s, giving the tube a time glass look

Always ask the Parent or Parent’s their advice, after all said and done, they know the child and their condition better than anyone, even some Doctors.

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 info sheet idea for a nursery

Hi Steve, wow! Of course, you can.  It would be an honour to help other parents…. we are it this together. I’ll paste it below.

From the Mother who wrote this, she has also given me the OK to put here on this website.

Hi guys…. I’ve just written a HUGE info sheet for my boy’s nursery staff and wondered if it might help anyone to use as a template? Please feel free to copy and edit as you need to.
Here it is….

We’ve made an information sheet (OK, a lot of sheets!)  how it affects the child, and what to do if things go wrong whilst he is eating.

Copy and Paste from Here

Brief History…
YOUR CHILD’S NAME HERE was born with a condition called Tracheo Oesophageal Fistula (TOF) and Oesophageal Atresia (O/A).
TOF means that his windpipe was attached to his oesophagus and O/A means that his oesophagus formed a pouch rather than attached to the stomach. details can be found on www.birth-defect.org.

This is an outline of what you could write yourself’s

He had an operation at one day old to enable his tubes to look and function the same as an average person. (Add your Child’s Details here)
(Your Childs Name Here) was NG tube fed (a tube up the nose, going directly into the stomach) for the first four months of his life as he didn’t have the ability to suck and swallow like other babies have. We had to teach (him-her) to suck and drink.
His oesophagus was very fragile and a bit narrower than it should have been so for the first two years of his life we only fed him very smooth pureed food and bite/dissolve food on the advice of his surgeon.
When he was (age) he had three operations to stretch the oesophagus as it was especially narrow and he was finding it difficult to swallow his food.
Unfortunately, the third operation went wrong and the oesophagus tore! He was in a critical state in intensive care and we very nearly lost him !! (Winter obviously doesn’t know or remember any of this… phew!)
Because there was a tear in the oesophagus any food, drink or saliva ran out of the oesophagus and into his lung cavity. Which resulted in him having 2 x chest drains as his lungs were unable to expand properly.
We spent eight weeks living in the hospital and waiting for the tear to heal. From December 2014 to January 2015 he was NG tube fed again (with the tube going straight into the stomach) giving the oesophagus plenty of time to heal by itself.
It eventually healed in January and we could start feeding him food orally again in February 2015 (when he started back at nursery). So Winter was nil by mouth for four months. At this point, we had to start him again on the very smooth pureed food that he had when he was a baby.

The last 18 months…… (your dates here)
Since February 2015 We have been working very hard with Winter’s food to work him up from puréed food, bite/dissolve food (like crackers and wotsits) to very small pieces of soft ‘normal’ food to eating the bigger, small pieces that he eats now. We have had to be very cautious about how fast we go because we don’t want to risk him having to have another operation.

Now… (December 2016)
We are absolutely delighted that (Your Child’s) Name is able to eat most of what his friends have at nursery and his consultant is keen for him to improve at his own pace. However, we must understand at this stage, that (Child’s name) oesophagus is not the same as ours.
It is slightly narrower and almost a bit funnel shaped.

If any other (your child’s age) swallows something that is too big for them it will naturally just be swallowed down into the stomach. But if (child’s name) were to do that then that the larger pieces of food get stuck at a narrow part of the oesophagus. Likewise, if (Child’s Name) was to put a big spoonful of tiny pieces into his mouth this would also get stuck at the narrow part of the Oesophagus.
Imagine dropping a handful of peanuts into a funnel…. If you drop them in one at a time they will go through with no problem, if you drop in the whole handful there will be a big blockage!

Do’s and Don’ts
Do you make sure he has a drink with his meal at all times? Don’t allow him to feel rushed when he is eating. Don’t let him race his friends! Don’t let him put loads of food in his mouth in one go. Don’t say to him ‘we don’t want you to get a sticky’! Do use encouraging language like ‘big boys chew all of their food up’. Do make sure he isn’t stressed when he is eating. If he has been crying before dinner, make sure he is totally calm before he starts eating.

What is a ‘stickie’?
A sticky is when food gets stuck within the oesophagus. Don’t forget (Your Child’s Name) has only been eating proper food for just over (Your Time i.e Months), not ….. 4 years like his friends. So he’s chewing practice is that of a two-year-old, not a 4-year-old. Sometimes, (Name) is able to get rid of a stickie himself now. It will either drop down into the stomach or he will bring it up whilst he is eating. Rolling the child is meant to help also, but do with care.

What to do with a stickie….
(He-she) will generally ask for a drink at this point, DON’T LET HIM HAVE A BIG DRINK! Just a little drink. Sometimes the drink will help the sticky to go down, other times it will help him to bring it up. Now, bear in mind that the stickie is stopping anything including drink from passing it. If he has a big drink then potentially drink could sit on top of the stuck piece of food and fill up to his windpipe and spill over into his lungs. This is definitely not what we want to happen!!! The Child will go blue and you would need to call an ambulance!

Sometimes the sticky will go down the oesophagus into the stomach. If that happens, he’ll just want to carry on eating, which is absolutely fine. Or he won’t want anymore….also fine.

A Big Stickie…..
Sometimes, we have experienced a total blockage with a sticky. You will only generally notice this if he has a drink and the drink and comes straight back out. Sometimes he will just bring up saliva (which just looks like an egg white foamy consistency) this means that there is a total blockage in the oesophagus and nothing is able to pass down into the stomach, even saliva!

What to do with a Big Stickie….
The most important thing is not to panic. Also not to panic (Your Child;s Name). He manages to stay very calm when this happens but he could easily get worried if everyone around him is worried. If a big sticky occurs, the oesophagus will swell around it. And the only thing that can really get rid of the sticky is to wait for the swelling to go down. (unfortunately, this means a 24-hour wait without food and drinks for him, which is very difficult when he is hungry and thirsty. After 24 hours we have to go to (Your Hospitals Name) because he will start to suffer from dehydration) if it is a very big sticky then this would be followed by an operation to remove the stuck food!

(Child’s Name) has got rid of stickies before with just waiting for a while and relaxing. So if you suspect a Big stickie then phone a parent to inform them. But it is absolutely fine to go off and have fun and play as normal. This might, in fact, get rid of the sticky. BUT DON’T LET THEM HAVE ANYTHING ELSE TO EAT!
Just let him have a sip of drink every 20 to 30 minutes to see if it goes down or not but remember… No big drinks!
If he is still bringing a drink up 2 hours after he has got the sticky then phone his Parents/Grandparents to come and collect him. ( there are some things we can try at home that might help to shift the stickies)

Coughs and Colds
Just before Child gets a cough or cold, he usually gets a sticky a few days beforehand. Coughs and colds can affect his swallowing as there is swelling of the throat and extra saliva to contender with. So when he has a cough or cold we need to either take extra care to chop his food finer than usual. Or to omit them completely and go with maybe a soup instead, until his cold clears up.

Problem foods (Dec 2016)
Pork, Beef, ( he generally only has these slow-cooked at home), Raw vegetables, hard fruits, Pasta, Bread.You could cut these in 6mm x 6mm pieces or omit. I’ll update the problem foods with the next terms menu (Add any you have to)

Thank you for taking the time to read all of this. I hope it all makes sense? (From a Mother of a Tof Child in the UK)

Here to give you an idea of what to write yourself’s

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For making eating easier at school.

sam-sinchies

Fancy starting a trend at your Child’s School?

I came across this idea from watching a program on tv about the world’s special forces, and what and how they eat, that started me looking for idea’s on how you could send your child to school etc, with something you made and they could feel cool about doing, and not have your child or those around them feel nervous, or apprehensive, about eating, or the teachers wondering if something might stick. I think what your see on this website will help you and your child, meaning Young children can enjoy feeding themselves through the handy spout which allows them to suck or squeeze out their snacks and meals. Older children can participate in the preparation process, learning about healthy foods along the way. So check out Sinchies, which offers a versatile system of clear, reusable, eco- friendly, BPA free, plastic pouches used for storing and serving nutritious liquids, soft foods, without the preservatives and sugars found in most pre-packaged goods. Sinchies reusable food pouches are designed for feeding”on the run” with no bowl or spoon required. Homemade goodness with store bought convenience! You can also use these for tube feeding as well as seen on their website, You can monitor exactly what goes into the reusable pouch.

For more info click here goes to our Company’s that support page.

http://www.birth-defect.org/ea-tef-tof-oa-companys-that-support/#sinchies

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USA Help

Chronic Conditions and School

My child has a chronic health condition. What do I need to tell the school?

11/21/2015

If your child has special health needs, the school should have a written document outlining a health care and emergency plan.

The following information should be in the document

A brief medical history

The child’s special needs

Medicine or procedures required during the school day

Special dietary needs

Transportation needs

Possible problems, special precautions

Pediatrician’s name

Emergency plans and procedures (including whom to contact)

Click on the underlined RED Writing

Once the school is informed a student has a chronic health condition, a meeting is often scheduled to discuss what services may be needed. The meeting should include parents, the student (if old enough), school health staff, the coordinator of special needs services, student aids, and the child’s primary teacher. Health care providers, such as the child’s paediatrician, also should be invited or asked to provide information in writing.

One goal of this meeting is to develop a written plan that clearly describes the services the student needs. Depending on the child’s needs, this plan may be described as a 504 Plan or an Individualized Education Program (IEP). This legal document outlines exactly what services the child will receive and sets short- and long-term goals for the child. The plan should be reviewed regularly to ensure it continues to meet the child’s needs.

Parent Responsibilities

The following are ways you can help your child receive the education and services he or she needs to succeed in school:

Talk to the school. Don’t be afraid to tell the school about your child’s condition. Some parents worry about sharing this information, but the more informed teachers and other school staff are, the better prepared they will be to help your child. If the school staff don’t have all the facts, they may make wrong assumptions about your child’s behaviour or performance.

Make an emergency plan. Ask your paediatrician to help you write down exactly what the school should do if your child has certain health needs. School staff should know how to reach you or your paediatrician in case there is an emergency. Remember to call the school right away when contact information has changed.

Make a health plan. If your child takes medicine at school, ask about the school’s policies for storage and self-usage. Make sure your child is able to take her medicine in a comfortable place, and that the school is provided with an adequate supply. Remember to call the school right away if there are any changes in your child’s condition.

Give your consent. You will have to sign a release form that gives the school permission to contact your paediatrician. Also, your paediatrician will need your written permission to discuss your child’s condition with the school. If your child requires medicine or special procedures, the school must receive written instructions from your paediatrician.

Plan ahead. Meet with your child’s teachers regularly to talk about how your child is doing at school. Ask if your child’s health condition is affecting her schoolwork or behaviour. If your child is missing a lot of school due to illness, talk with her teacher about ways to help her keep up with her work.

https://www.healthychildren.org/English/health-issues/conditions/chronic/Pages/Chronic-Conditions-and-School.aspx

Know the Law 

By law, your child is entitled to an education that will help her develop to her full potential. Schools may be required to provide additional services that will assist in both in-school programs and after-school events. Federal laws such as the

 Individuals with Disabilities Education Act (IDEA) 

and the Americans with Disabilities Act (ADA) state that every child should be allowed to attend school in the “least restrictive” setting possible.

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Know your rights in UK

HELP FOR YOUR CHILD

Welcome to Child Law Advice

http://childlawadvice.org.uk/

Know your rights in the UK

As a parent or carer of a disabled child, you might be entitled to certain benefits and services that can help you, your child and your family.

http://www.cafamily.org.uk/know-your-rights/ 

ACE Advice and Information Service

Our information is based on current education law and guidance and covers state funded education for children aged 5-16 years in England only. Our advice and information aim’s to give parents up to date knowledge of law and guidance as well as practical and tactical advice on how to work with their child’s school to resolve any concerns.  Our advice covers a wide range of educational issues.

http://www.ace-ed.org.uk/

Special Educational Needs

http://www.ace-ed.org.uk/advice-about-education-for-parents/special_educational_needs?

Getting the EHC Plan right

All parents want the best for their children. Some children may need more help than usually can be provided by schools and this help must be set out in a Statement of SEN or the new Education, Health and Care (EHC) Plan

Before an EHC Plan is written, the local authority will ask your child’s school and other professionals to assess your child and write reports.

If the local authority decides to issues an EHC Plan you have the right to make comments and to make a request for the school you want your child to attend

An EHC Plan says what special educational help a child must be given and where they must go to school.

If the local authority decides to issue an EHC plan they must produce a draft EHC plan. Parents must be given 15 days to suggest changes to the draft EHC plan and express a preference for the school they want their child to go to. The local authority must ensure that the whole process (from request to final EHC plan) is completed within 20 weeks.

An EHC plan names the school that the child must go to. Most children with EHC plans go to mainstream school.

The parent normally has a right to send the child to a mainstream school. However, the school must be able to meet the child’s needs and the effect of the child on the education of others will also be a crucial factor.

The parent can appeal to the First-Tier Tribunal (Special Educational Needs and Disability) against a decision not to issue an EHC plan or against the educational contents of the EHC plan, including the school. The parent must consider mediation if they wish to appeal.

http://www.ace-ed.org.uk/advice-about-education-for-parents/special_educational_needs/getting-the-statement-right-a-practical-guide-to-parents-legal-rights?

UK

The Red Balloon

 

RBs were established with the primary aim of providing a full-time education for children who have self-excluded from mainstream school because of severe bullying or other trauma. The aim is to raise a student’s self-esteem, enable them to come to terms with what has happened, help them learn how to deal with difficult situations, and get them back on an academic track in order that they return to education. It is a ‘transitional intensive care’ Centre where children come for a period of time, typically three terms. It is not a place where children come with the intention of seeing out their statutory education.

About 300 children and young people have attended RBs since 1996. The one feature they have all had in common is that they had stopped going to mainstream school because they were frightened, felt they would be ‘picked on’, further humiliated or fearful that they would be assaulted. In many of the cases, the children had been out of school for weeks, months and, in some cases, years. This situation of non-attendance had occurred maybe as a result of a being bullied because they had suffered a trauma such as rape or assault, a family tragedy such as the death of a parent, their parents’ messy divorce, or they had missed a considerable amount of school already because of an accident or severe illness such as cancer.

Once they stop going to school and believe it is their fault, they can develop mental health issues such as anxiety, depression, self-harm, social phobia, eating disorders, and suicidal thoughts; over 50% of the children at RB Centres have seriously thought about suicide or have attempted it.

Our students have varied widely in age, background, ability and interests. On occasion, we have taken ten-year-olds and young people of 16 or 17, but most of the students in our Centres are between 14 and 15.

Some come from single-parent families, others have step-fathers, some have siblings, half-siblings and step-siblings, others are only children. Some have been ‘high-flyers’, some have found academic work difficult. Some love creative subjects, some are musical, some read only factual books, some do not read books at all. We have had children from the independent sector and children from low-income homes, from migrant families and from established local families. We have had redheads, blondes, mixed-race, gay, disabled, looked-after, adopted, fat, thin, tall, short children.

Children who self-exclude from mainstream school or attend irregularly because of trauma brought on by bullying or some other event or circumstance and satisfy our criteria are the type of child for whom RB was set up, who benefits and who succeeds.

CONTACT DETAILS

 http://www.redballoonlearner.org/

https://www.charitycheckout.co.uk/1109606/donate

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Looking at home schooling

Looking at home schooling your Child? Links Below.

https://www.facebook.com/groups/homeschooluk/

http://www.birth-defect.org/useful-websites-info/#home-education-in-england

What to do if something stick’s

This might help it comes from a Parent from the USA and been tried by a Parent in the UK, we have been asked to put it on this website.

If you get a child that gets food stuck, try putting them on the floor and rolling them.

Comment from UK Parent 

she felt something had stuck and she wasn’t going to eat any more breakfast, but then she did the drop and roll and ate some more, whatever works hey.

I’d rather try something and see if it works than not try at all.

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This was taken from a Question raised by a Parent on our Face-Book Group

Hi…seeking advice on food getting stuck. I have an 18-month-old baby girl who has had food stuck twice and thrown it back up. We had an incident last night at dinner. Something was stuck and she coughed a lot. We gave her water and kept encouraging her. She finally gagged and seemed to throw up, but then swallowed that. She seemed ok after dinner and played happily until bedtime.  But, again threw up, it was clear fluid. Curious if this could mean something is stuck??

Answer back From other Parents

Try fizzy water, coke or pineapple juice syringe it in if she won’t swallow it herself. If you think it’s still not shifted get her checked out.

Fizzy pop

This can work for most Children my advice is if your not happy phone for help.

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Test for Dyslexia: 37 Common Traits

Most dyslexics will exhibit about 10 of the following traits and behaviours. These characteristics can vary from day-to-day or minute-to-minute. The most consistent thing about dyslexics is their inconsistency.

Take the TEST with your Child

Test for Dyslexia: 37 Common Traits

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Language Delays in Toddlers

Click on the RED underlined writing

Information for Parents

Your baby is able to communicate with you long before he or she speaks a single word! A baby’s cry, smile, and responses to you help you to understand his or her needs. Learn how children communicate and what to do when there are concerns about delays in development.

Language Development: 1-Year-Olds

Early in the second year, your toddler will suddenly seem to understand everything you say. You’ll announce lunchtime and he’ll be waiting by his high chair. You’ll tell him you’ve lost your shoe and he’ll find it. At first, his rapid response may seem a little unusual. Did he really understand, or is this just a dream? Rest assured, it’s not your imagination. He’s developing his language and comprehension skills right on schedule.

This giant developmental leap probably will alter the way you now talk to him and converse with others when he’s around. For example, you may edit conversations held within his earshot, perhaps spelling out words you’d rather he didn’t understand (as in, “Should we stop for I-C-E C-R-E-A-M?”). At the same time, you’ll probably feel more enthusiastic about talking to him, because he’s so responsive.

You may find yourself using less baby talk, no longer needing high-pitched singsong monologues to get his attention. Instead, try speaking slowly and clearly, using simple words and short sentences. Teach him the correct names of objects and body parts, and stop using cute substitutes such as “piggies” when you really mean “toes.” By providing a good language model, you’ll help him learn to talk with a minimum of confusion.

Most toddlers master at least fifty spoken words by the end of the second year and can put two words together to form a short sentence, although there are differences among children. Even among those with normal hearing and intelligence, some don’t talk much during the second year. Boys generally develop language skills more slowly than girls. Whenever your child begins to speak, his first few words probably will include the names of familiar people, his favourite possessions, and parts of his body. You may be the only person who understands these early words since he’ll omit or change certain sounds. For example, he might get the first consonant (b, d, t) and vowel (a, e, i, o, u) sounds right, but drop the end of the word. Or he may substitute sounds he can pronounce, such as or b, for more difficult ones.

You’ll learn to understand what he’s saying over time and with the help of his gestures. By all means, don’t ridicule his language mistakes. Give him as much time as he needs to finish what he wants to say without hurrying, and then answer with a correct pronunciation of the word (“That’s right, it’s a ball!”). If you’re patient and responsive, his pronunciation will improve gradually.

By midyear, he’ll use a few active verbs, such as “go” and “jump,” and words of direction, such as “up,” “down,” “in,” and “out.” By his second birthday, he’ll have mastered the words “me” and “you” and use them all the time.

At first, he’ll make his own version of a whole sentence by combining a single word with a gesture or grunt. He might point and say “ball”—his way of telling you he wants you to roll him the ball. Or he might shape a question by saying “Out?” or “Up?”—raising his voice at the end. Soon he’ll begin to combine verbs or prepositions with nouns, to make statements like “Ball up” or “Drink milk,” and questions like “What that?” By the end of the year, or soon thereafter, he’ll begin to use two-word sentences.

Hand and Finger Skills

 Your baby’s mastery of crawling, standing, and walking are bound to be his most dramatic accomplishments during these months but don’t overlook all the wonderful things he’s learning to do with his hands. At the beginning of this period, he’ll still clumsily “rake” things toward himself, but by the end, he’ll grasp accurately with his thumb and first or second finger. You’ll find him practising this pincer movement on any small object, from dust balls to cereal, and he may even try to snap his fingers if you show him how.

As your baby learns to open his fingers at will, he’ll delight in dropping and throwing things. If you leave small toys on the tray of his high chair or in his playpen, he’ll fling them down and then call loudly for someone to retrieve them so he can do it again. If he throws hard objects such as blocks, he might do some damage and probably will increase the noise level in your household considerably. Your life will be a little calmer if you redirect him toward softer objects, such as balls of various sizes, colours, and textures. (Include some with beads or chimes inside so they make a sound as they roll.) One activity that not only is fun but allows you to observe your child’s developing skills is to sit on the floor and roll a large ball toward him. At first, he’ll slap randomly at it, but eventually, he’ll learn to swat it so it rolls back in your direction.

With his improved coordination, your baby can now investigate the objects he encounters more thoroughly. He’ll pick them up, shake them, bang them, and pass them from hand to hand. He’ll be particularly intrigued by toys with moving parts—wheels that spin, levers that can be moved, hinges that open and close. Holes also are fascinating because he can poke his fingers in them and, when he becomes a little more skilled, drop things through them.

Blocks are another favourite toy at this age. In fact, nothing motivates a baby to crawl quite as much as a tower waiting to be toppled. Toward the end of this period, your child may even start to build towers of his own by stacking one block on top of another.

Milestones during the first 2 years

Children develop at different rates, but they usually are able to do certain things at certain ages. Following are general developmental milestones. Keep in mind that they are only guidelines. If you have any questions about your baby’s development, ask your child’s doctor—the sooner the better. Even when there are delays, early intervention can make a significant difference.

For more on this click the link below:

When milestones are delayed

Delays in language

What your child’s doctor might do

https://www.healthychildren.org/English/ages-stages/toddler/Pages/Language-Delay.aspx

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Useful Links...